need your help

February 3, 2001

I know that we are not a medical group so to speak but I have a problem and

would like anyone's input.....

I have 4 different people right now that have been diagnosed w/ something

else (MS and ALS cases) and once they were tested for lyme came up positive

as well as the co-infections..... The problem..these people are 71yrs old,

late 30s., and 40s and the common thread they all have is ALL are now having

severe difficulty with swallowing/talking. Some are at the point of feeding

tubes. The only similarity between all of them is, all of them are on flagyl,

not that that is the problem necessarily.

Now I am not a dr. but I am trying to help figure this out.....

Anybody have any similar experience? any suggestions?

sue in nj

February 3, 2001

Dear Sue,

I didn't look this up before responding to your question, but don't both MS

and ALS

eventually cause difficulty in swallowing? If I recall correctly, it's not

unusual for

MS patients to die from aspiration pneumonia and ALS patients die from

respiratory

insufficiency/aspiration pneumonia. That they all tested positive for Lyme makes

me

wonder if that's what caused their MS and ALS clinical pictures. I think it's

wonderful

that they are being treated with an AB.

Eileen, Essex County, NJ

July 15, 2002

renee have you every looked into the possiblity that she has afocus due to a

febrile seizure. our son was finally properly diagnosed after many year with

mesial temporal sclerosis which is common in children that have had prolonged

febrile seizures.

July 16, 2002

Dear ',

Has your daughter been checked for blood sugar problems? Nutritional

deficiencies (Magnesium, B Vitamins, Manganese, Chromium, Selenium, Zinc, Amino

Acids, etc.)? Has she been tested for food allergies or intolerances? Wheat

and dairy are particular offenders, though there are others. Others in this

group have mentioned parasites and stealth viruses, though they'll have to tell

you more about those. Have doctors checked thyroid and cortisol levels, as

well as hormones? It is customary to have a follow-up MRI one year after the

first one to be certain there are no changes. (I had to press for this.) Has

she had a follow-up MRI?

These are my initial thoughts regarding what you wrote. There are certainly many

more avenues to research and I'm sure others on this site will add much more

than I am able to give you. I just hope this gives you a starting place!

Best wishes,

Carrol

deardendj <deardendj@...> wrote: Hi Everyone,

This is ', Mom of 5 year old , partial complex

seizures, normal CAT and MRI, abnormal EEG. She started having

breakthrough seizures the beginning of June (after being seizure free

for a year), and the continual increase in her dosage of tegretol is

not only not working - she is looking " high " after the doses take

effect. Her breakthroughs are different than her first two original

seizures which lasted for over 40 minutes, these breakthroughs are

staring spells, somes times with stuttering (dadadada). Well with

out being too extreme we have removed all processed foods from her

diet and are following the food pyramid for the Academy of Pediatrics

website. We have already conversed with Dr. s (who cannot take

her because she is under the age of 8) about diaphramatic breathing.

Well we are switching neurologists (the records retrieval process is

terrible) Well what I would like from the well educated/experienced

group is a list of tests and/or questions that I could put together

for the new dr. so that I get something other than " raise her 50 mg " .

I will take anything you have got.

Thanks so much

My best to all of you,

'

August 19, 2002

Dear ,

After I heard Karyn's story when Couric interviewed her on the Today

Show last week, I thought of doing exactly the same thing. Maybe I still

will.

Good luck to you.

Haven't checked out her site or yours yet, but I'm looking forward to it.

bluesky

> From: " Crazy_ " <jenglasser@...>

> Reply-

> Date: Mon, 19 Aug 2002 07:50:52 -0000

>

> Subject: [ ] Need Your Help

>

> I was given a URL from a friend. It was the website of a woman who

> racked up 20,000 dollars in shopping debt and is now asking people to

> help her pay it off. Much to my surprise, people started giving her

> donations. To date she has received over 6,000 dollars (her website

> btw is http://www.savekaryn.com).,..........

>

> Any help would really be appreciated. The website is

> http://www.helpjennifer.com

August 20, 2002

Jenn-

I read your website asking for help but...... You did not let anyone know

WHERE or HOW to send you $$$ !!!! You have to have PayPal or an address or

something....

Also, if you contact me personally, I can help you in a better way....

sue in nj

sue massie

August 20, 2002

My address and paypal button is on the donations page. Just click

the word donations in the sidebar.

http://www.helpjennifer.com/donations.htm

I'll need your email to contact you personally, I can't seem to pull

it off of the .

Thanks! )

Jen.

> Jenn-

> I read your website asking for help but...... You did not let

anyone know

> WHERE or HOW to send you $$$ !!!! You have to have PayPal or an

address or

> something....

> Also, if you contact me personally, I can help you in a better

way....

> sue in nj

> sue massie

August 21, 2002

Jen-

I have various e-mail addresses but the best one would be lymehope@...

My Ssadlermas@... is always full, 1,000 e-mails! YIKES!

sue in nj

sue massie

April 29, 2004

Ooopss....didn't mean to leave any of the dads out! Please, please, send

me your thoughts/statements

Thanks so much!

and Rob 15 Spondy

On Wed, 28 Apr 2004 14:17:53 -0400 snooksmama@... writes:

> Hello everyone:

> I am going to briefly speak at the Arthritis walk in a few weeks,

> along with many others. I have a limited amount of time to talk. I

> was thinking about what I wanted to say, and thought it might be

> neat if I could offer quotes from other moms about raising a child

> with arthritis and our hopes for the future. If you would like to

> offer a quote I could use, please email me privately at

> snooksmama@... and please include your child's age and type of

> arthritis. I will not be using names in my talk, just anonymously

> mentioning the age of your child, type of JRA and your quote. Thanks

> for your help!

> and Rob 15 Spondy

September 28, 2005

Dear Tracie,

Good to hear from you!

Glad to hear you are interested in pursuing your education as a

technician.

I recalled that one year not long ago the PTCB agve an Innovation

award to some one out of Arizona for their project on 'clinical

pharmacy technicians " . I had attened that ASHP Mid Year in Las Vegas.

I ran it through a computer search and found this:

http://www.ptcb.org/Downloads/News/Presentations/UseofClinPharmTechPhoenixVA_ASH\

P2000.pdf

The above is a power point presentation of what I saw at the meeting!

What I heard was even more powerful.

I think one must DEFINE their use of the words 'clinical pharmacy

technician' and then outline the duties that would be performed by

one. After that we can begin to be on the same playing field.

I read the link that Joe Medina provided, and found that the duties

outlined for Essex London England would not be acceptable here in the

USA. They expeceted that 'accreditted' tech to counsel the pt.

After hearing about the project that PTCB awarded, I believe I had

always been a clinical pharm tech in California to some degree!

However the project makes it clear that the ClinicalPT also handles

gathering lab data, which is something I did not do and flaging it for

he pharmacist.

I also recall at the NPTA convention held in 2002 or 2003 in Las Vegas

that two female techs,again I think from Canada, were doing some

clinical pharm tech project with anticoagulation clinic stuff. They

were part of the Poster Session. These techs were calling the pts to

verify their appts and even TELLING them how much Coumadin to take

based upon the techs interpretation of the last confirmed lab blood

test results!!!!

If they were American I think I would have followed up more on this. I

may be wrong of their citienship, but I do believe with your NPTA

connections that you would be able to follow up on this.

I hope this helps and if you can please sign on as a member of this

site with the new email addy.

Respectfully,

Love ya

Jeanetta Mastron CPhT BS

F/O

> Hey Jeanetta..

> I hope you can help me here.. Im trying to find out if there is a

course for clinical pharmacy technicians or would i have to take the

course for pharmacy technician in order to get the clinical part of

it.. I found a report online (dont ask me where have no clue.. found

it on accident) about " development of a clinical pharmacy technician

training course " but I cant find out who is acutally giving the

course. Any clues on what I can do here.

> You can email me privately at tjrcpht@c... would have done the

same here except I have lost all my email addy's..

> Chat with you soon.. Hope all is well..

>

> Respectfully

> Tracie Smullen, CPhT

> Va State Coordinator-NLC

>

September 28, 2005

Dear Tracie,

If I am not mistaken there is a tech by the name of Weeks who I

believe is doing some clinical pharmacy tech projects in the US. I

will try to find her email addy.

In addition, I do beleive that you should have a solid pharm tech

FORMAL educational background BEFORE you begin such a program..... or

perhaps at the very least college chemistry and biology classes with B

or better. A GREAT understanding of the body systems and disease

states is necessary to do what is required at the max.

In a future post I will outline some duties of the clinical pharmacy

tech .... Got to rush off to work now!~

Love ya

Jeanetta

> > Hey Jeanetta..

> > I hope you can help me here.. Im trying to find out if there is a

> course for clinical pharmacy technicians or would i have to take the

> course for pharmacy technician in order to get the clinical part of

> it.. I found a report online (dont ask me where have no clue.. found

> it on accident) about " development of a clinical pharmacy technician

> training course " but I cant find out who is acutally giving the

> course. Any clues on what I can do here.

> > You can email me privately at tjrcpht@c... would have done the

> same here except I have lost all my email addy's..

> > Chat with you soon.. Hope all is well..

> >

> > Respectfully

> > Tracie Smullen, CPhT

> > Va State Coordinator-NLC

> >

October 5, 2005

Hey J-

I remember the presentation on clinical techs at the NPTA convention

2003. Those were the same techs as in your link---from the VA

hospital

in Arizona. What an inspiration---they were indeed monitoring

warfarin

doses and writing TPNs (per algorithm or protocol and with pharmacist

support.) Keep in mind they were from a Veteran's hospital---it seems

like the rules/scope of practice is different than on the outside---

Still, their presentation must have planted the seeds of innovation

in

more than a few attendees.

I love going to conventions---I can take what I learn there and

taylor

it to fit my facility needs.

Dora

October 7, 2005

Dear Dora,

Boy I sure am glad some one else besides me remembers this!

I too was sooooooooooooo impressed with the work these techs had done.

I do recall that the techs I met were from Canada. But I recall the

Innovation award to Weeks in Arizona I thought.

What I recall about the warfarin clinic techs is that they got to call

the pts and tell them how much warfarin to take or decrease or

increase their dose to and when the next appointment would be. I think

I would really like to do something like this one day.

Any way the one fact remains that going to NPTA ,AAPT And ASHP and

CSHP seminars and conventions has been very educational, challenging

and rewarding both professionally and personally.

While we had 'met' on the net, if it had nto been for an NPTA

convention I would never have met you!

Dora, YOU have my love and deepest respect,

and my gratitude for all that you have done and continue to do for

this site as moderataor. So I publicly THANK YOU DORA for your time

and comittment to the site.

With deep appreciation,

Jeanetta Mastron CPhT BS

Founder/Owner

>

> Hey J-

> I remember the presentation on clinical techs at the NPTA convention

> 2003. Those were the same techs as in your link---from the VA

> hospital

> in Arizona. What an inspiration---they were indeed monitoring

> warfarin

> doses and writing TPNs (per algorithm or protocol and with pharmacist

> support.) Keep in mind they were from a Veteran's hospital---it seems

> like the rules/scope of practice is different than on the outside---

> Still, their presentation must have planted the seeds of innovation

> in

> more than a few attendees.

> I love going to conventions---I can take what I learn there and

> taylor

> it to fit my facility needs.

>

> Dora

>

August 22, 2006

Hi G,

I have the same ailment as you, plus scoliosis. When I was a young

girl it was diagnosed as double major kyphoscoliosis with rotation

and exaggerated lordosis. When they braced me with the Milwaukee

back brace that was standard at the time for scoliosis I remember it

being a real challenge, not only for my orthopedic doctor (Eugene

Bleck at Stanford University's Children's Hospital), but also for

the orthotist. Pads and straps in every direction trying to tame

all my curves!

I don't know if knowing this is a help to you or not. But it sure

makes me feel less alone knowing that someone else has these curves

the other way. It is difficult to deal with. I really get so tired

of fighting to keep my head on top of my body! It feels as though I

am being pushed forward by this unknown force. I have all these

things going on in my lumbar spine that need to be corrected but I

really hurt more in my thoracic spine because of my kyphosis. I've

been told that they can't treat both at the same time and that doing

osteotomies in the thoracic spine is very risky.

Good luck and thanks for writing to tell about your problem.

Kelley

>

> First I would like to thank Cam for this forum and directing me to

> this message board.

>

> I also wish to say that I appreciate the desire of those on here

to

> help and to share their experiences. It does take a lot of courage

> to

> share your thoughts about this topic.

>

> That being said, I need your help or any suggestions on my

> perdicament.

>

> I have seen many doctors over the years. I am currently in my mid

> 30's

> and am physically getting worse. This is a physical and mentally

> debilitating thing= flatback.

>

> Where I differ from most is that my " flatback " symptoms are

natural

> and from simply birth. I have seen nueroligists, spinal surgens,

> chropracters, and physical therapists who are baffled as to the

> shape

> of my spine....

>

> Most scoliosis is if looking at someones back would be side to

side=

> where shoulderblades are vastly un-even or rib cages are uneven...

>

> My spine is shaped like an exaggerated s= where the lower spine

> extends toward my belley button and my upper spine is sticks out

and

> is very curved..almost " arch " like in look.

>

> As I get older my kneck is taking the brunt of this irregularity

as

> well as my knees.

>

> I would really like to find someone who has some expertise in rare

> forms of scoliosis to help rectify my posture.

>

> It is hard to put into words actually how it looks and how hard it

> is

> at times to deal with mentally. I would appreciate any comments or

> potential leads to resolving this issue. I thank all of you in

> advance

> for responding and am greatful to find this forum..

>

> I will be away for a week on business but can't wait to hopefully

> read

> some suggestions from the members here.

>

> Thanks and I hope someone has some info on natural/congenital

> flatback... All the best G

>

August 22, 2006

Kelley/G,

One of my nurses at had kyphoscoliosis and had surgery with Dr.

Lenke. She said she grew several inches after her surgery. It was quite

comforting to know someone sort of understood and we talked a lot about

preserving our bodies for the long haul (she was in her early

twenties). I emphasized to her how important it is to maintain muscle

tone and focus on low-impact exercise. She also said she had no regrets

about the surgery (I know that there were osteotomies done and she is

fused to T1, I believe). She was in a great deal of pain prior to her

surgeries, but is pain-free now. I don't have any first-hand experience

with this (I have a lack of kyphosis in my thoracic spine), but thought

I'd share what I do know.

kam

April 7, 2008

Tell me what your taking and when how much. If doing HCG what kind and how much

and how old is it time after you mixed it. Post your labs and tell me when you

did them after your last shot. Do you feel ok this can be a bad lab. I get

this a lot in the last 25 yrs. Never change meds on one lab redo them first.

romrelllj <romrelllj@...> wrote: does any one know of a good DR

in utah for TRT if you know of one I

will give you a few bottels of my hcg for your help. I am desperate

My levels have droped from 750 to 198 and I don't know why I am

trying to follow the recipe for sucess and all of a sudden two years

later every thing is crashing. please some one give me advise as what

I need to do.

Co-Moderator " Don't believe anything you hear and only half of what you see. "

Phil

---------------------------------

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

April 26, 2009

Hi

I am new to this group. My father had lung cancer 5 yrs ago. He had surgery to

remove it. Now 5 yrs later he has been diagnosed with a small tumor in both his

lungs, one in the adrenal gland and a walnut side tumor in the back of his head.

He went for radiation on his head about 1.5 mos ago. We still dont know if this

helped or not. Dad is waiting to have another brain scan scheduled for him. He

has had minor headaches periodically. But since the radiation his appetite is

not good at all. Says that food doesnt taste good to him. He has lost over 30

lbs in the last few months. Doctors say they dont want to give medication to

bring his appetite back. But he cant go on this way, somedays he eats hardly

anything. He is very moody to say the least. Dad says he doesnt have any kind of

pain anywhere which is good. Doctors are not going to operate, nor give him

chemo or radiation on the lungs or gland for now. Probably because he is not

feeling any pain. They want to wait and see. He is in his 70's. I feel its

almost like doctors arent doing a whole lot because he has so many tumors and

his age against him.

I joined this list in hope that someone here can help me out. Please if anyone

has any advice, I would love you to hear it.

Donna

April 26, 2009

Hey, i hate to hear about your father, and unfortunately there is no miracle

cure, but this alternative may be nice for you to have. The product in

phytoplankton, which is the purest know food to man. Doctors tend to shy away

fromf this because of the lack of money in it, but it has worked on my sister's

mother's thyroid, and my grandpa is also currently using it to fight bone

cancer. I hope you will take a look, i really think this could help if he can

manage to keep it down.

http://www.vibranthealthstore.com/files/2861142/uploaded/Fearless%20Health%20The\

%20Truth%20About%20Cancer.pdf

best of luck to your family,

Cameron

>

> Hi

> I am new to this group. My father had lung cancer 5 yrs ago. He had surgery to